So after almost two years of searching for doctors to help my daughter with her very complicated, diffused AVM I have 3 amazing well known doctors wanting to help her. Her doctors at home suggested to only monitor because surgery would be horrible for her and radiation is not possible due to the diffused natured of her AVM, so no treatment advised. Now I have 3 and we are having a hard time deciding
#1 Dr Nalin Gupta UCSF recommended radiation no surgery for her 40-50 percent chance it will work
#2 Dr Abla in Miami suggested surgery and he is confident that is the best way
#3 DR Lawton at Barrows suggested surgery for her he is also confident that is the way to go with 10 percent risk acessment
All 3 doctors are amazing and have even worked togheter at some point I respect all 3.
My daughter is12 so is very hard to decide the best way
Any experiences or advices?
The only thing I can say is that weâve heard Lawtonâs name a thousand times. Have a search on here and I think youâll see.
The others I donât recognise name-wise but that doesnât make them less good at choosing the right route.
Hi,
My daughter was (and still is) in a similar situation to you. We received second opinions from both Dr Lawton and Dr Gupta as well.
Dr Gupta is more likely to recommend radiation, that is his preferred treatment for diffuse AVMs. Dr Lawton is more likely to recommend surgery if it can be done (thatâs his expertise). We received the same recommendations and estimates from the same docs for our daughter. However, Gupta did say that we would likely need surgery after radiation. We were also told by her local team that treatment is too risky and they advised against it.
We had booked a flight to Arizona and were ready to move forward with Dr Lawton, but I still felt uneasy about the decision. In the interim, we ended up consulting two other teams, Mt Sinai and Boston Childrenâs, as we live on the east coast. Mt Sinai recommended staged embolizations and then surgery. We ended up going with them as their endovascular neurosurgeon is highly regarded and I liked the idea of staged embolization (Lawton was just recommending one âbigâ embolization beforehand). I liked the idea of 3 small embolizations to allow her body to slowly adjust to the changes in blood flow. This felt less risky to me. I preferred pre-op embolization over radiation, as radiation can have more long-term effects.
We have completed 2/3 embolizations with the third scheduled for next week followed by craniotomy. Weâre not done yet so I donât want to get ahead of myself, but Iâm very happy with how things are going. Her AVM was very diffuse and growing, about 6 cm x 4 cm. She now has 2 small compact niduses side by side measuring about 1.5 cm x 1 cm each.
Her local neurosurgeon, who advised against treatment, told me that no matter what I decided that it wouldnât be wrong because there is no right answer. You have to go with the treatment that you are most comfortable with. If you donât feel comfortable yet, maybe get another 1 or 2 opinions.
Wow very similar situation! Isabellaâs AVm is about 3cm and diffused. Dr Gupta also said she will probably need surgery after as well so we are going with surgery. Now that I know that I have to choose between DrLawton or Dr Abla both are amazing. Dr Abla thinks embolization just adds another risk in her case and he doesnât recommend it. Dr Lawton wants to do embo before surgery.
Prayers for your daughter! Is also great that your local surgeon is backing you up with whatever you decide. Iâm meeting my local team soon to let them know my plan as well.
Thank you! Prayers for your daughter as well. You will make the best decision for her! There is no right answer, just gotta go with what feels right and take a leap of faith 
Hi, I have no answers because we are in Europe but I want to wish you well. We are in a similar position and are waiting to hear back from the team of doctors looking after my 15yo daughter. She had a hemorrhagic stroke 4 months ago followed by the surprise news of multiple avms. Two were embolised there and then. She had a follow up embolisation last month but the it was unsuccessful as the location is too close too to the brain. Now we wait to hear if she is a candidate for a craniotomy or gamma knife.
Dr. Lawton successfully performed embolization and surgery for our 13 year old son over five years ago. Highly recommend him and his team. He wrote a medical textbook on AVMâs, which my husband and I both read before making our decision. Very competent and professional. Our son has no deficits and lives a normal life now. We are so grateful to Dr. Lawton, Phoenix Childrenâs hospital and all their staff. Blessings to you all.
What do her angiograms look like? My team couldnât do artery embolization because of the direction the AVM faces, and venous embolization was unsuccessful because I have two veins in the AVM. But I really hope itâs an option for your daughter!
My 19-yr old daughterâs grade V AVM was successfully resected in September 2021. We felt we had no other choices because it had bled twice in 50 days after her 2nd dose of the Moderna vaccine. Sorry, vaccine lovers, but this is why my daughter is now disabled for life. Despite us telling her 1,000 times sheâd better not even think about getting it. Our neurosurgeons here in St. Louis didnât want to touch it because of its severity and location. Gamma knife is all theyâd consider. They also said there was nothing there to embolize, yet Dr. Lawton found TWO feeding arteries to embolize during his angiogram. I wouldnât believe anything anyone says about an AVM but him. Heâs resected more than 1200 of them and has done enough of them to classify them into six sub types. He IS the master and who you should entrust for your daughterâs care. Biased of course, but the success heâs had is beyond irrefutable.
Thank you! We flew all the way to Arizona from Canada to meet Dr Lawton. He was very confident that surgery for her is the way to go. He thinks she will be weaker first but she is 12 so hopefully recovers fast. Her AVM is diffused and complicated but he said if this was heâs daughter this is what he would do.
How is your daughter doing
My daughterâs AVM bled when she was 13, misdiagnosed by Stanford children as meningitis. Finally ucsf properly diagnosed it two yrs later due to small visual deficit. 1.5cm right temporal. Dr Auguste/lawton said surgery w high confidence of minimal further deficit. 2nd opinions from ucla and Hopkins were radiation and do nothing/monitor. Stanford said cyber which we basically ignored. We decided gamma at ucsf to minimize disruption to her life, knowing surgery can be plan B. Doctors prescribe whatâs best based on the tools they know best and the patientâs condition. We are glad we took the âlighterâ hand approach and her 5 yr angiogram confirmed complete clearance. Trust your gut, there is no perfect solution. Best wishes to your family.
So happy everything worked out for her! Yes is very hard with so many opinions on treatment is sooo stressful. I know they are all amazing doctors but is so hard
Sheâs doing great! Thx! Despite the daily challenges she would be nowhere near this point without Dr Lawtonâs unprecedented success. Our thoughts and prayers are with you.
Thank you. Prayers for your family as well! I just canât believe one doctor saying surgery for her would be catastrophic and another doctor like Lawton say, no it wonât be. blows my mind and makes it very difficult!
I certainly understand. The docs that say surgery would be catastrophic are basically saying they donât have the confidence nor the skills to safely resect the AVM. Lawton has more than paid his dues to understand AVMs better than anyone we were able to find. His confidence is unwavering, but that is the direct result of his vast experience. I only wish weâd gotten our daughter to him immediately after her first, small bleed. Had we done that she wouldnât have the permanent physical deficits that the second, nearly fatal, bleed caused. We wish you and your family all the best with these very difficult decisions.
It gives me chills to read that the Moderna vaccine caused a brain bleed. In 2020 (around when my AVM regrowth was confirmed by the second bleed), I begged my family doctor to write me a vaccine exemption letter. She argued with me and challenged my decision not to get vaccinated. Against her better judgement at the time, she wrote the letter when I persuaded her to consider the unknown risks of these ânew vaccines.â
A couple years later when it was revealed that the vaccines caused bleeding risks, she apologized for not taking my concerns seriously at the time of her writing the letter. She admitted that no other patient besides me had convinced her to write an exemption letter on their behalf. I am so glad to have been my own advocate when not even a medical professional was hearing me.
I wish your daughter all the best in her medical journey!
-Julia
Hermione:
Thank you so much for your well wishes. I am equally glad that you advocated for yourself in one of the most messed up times in our world history. No one, no company, no entity should ever have the unelected power to force under duress a person to accept a vaccine for which they bear no liability. Itâs insane. Iâm also thrilled to hear that your misguided doctor not only wrote you the exemption, but also owned up later to her irrational thinking./questioning We wish you all the best with your continuing AVM journey. Please keep in touch.
Devon
Thank you for your kind response, Devon! I was hospitalized in 2020 for my second bleed and being in ICU during covid lockdown was one of the most traumatizing experiences of my life. My parents eventually got vaccinated only so they could tend to me in hospital, but they both worried about the risks of the vaccines for themselves.
I canât help but wonder how my condition might have worsened with the side effects of the Covid vaccine. The day of the bleed, my ER doctor told me, âItâs not like last time.â (He was my doctor the day of my first bleed too.) Luckily my body reabsorbed the blood, without needing to have it medically drained like before.
How is your daughter? You can let her know she has me as her emotional cheerleader. You can also send me a private message anytime.
-Julia